Provide more financial support for children and parents of children living with this condition. Also research into this rare genetic condition, which affects my son and our family.
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This is a rare and very misunderstood condition and there is a lack of support for children living with this disabling condition and their parents. This is leading to poor mental and physical health of parent caregivers as professionals don’t understand the condition properly or how it impacts individuals. It is not the same as any other condition and has it’s own unique problems which are significant to families living with this.